How Getting My Autism Diagnosis Lifted the Clouds in My Head
A lot of people get a cloud in their brain now and then, but I feel like I have a cloud in my brain every day. Sometimes it’s dark and grey, other times it’s white and fluffy, but it’s always there, muffling everything, filtering and distorting the information I receive from the world. That’s not to say it’s a bad thing. Although the words “cloud” and “cloudy” are associated with depression and memory loss, clouds are neither inherently good nor bad. They’re just there, in the sky, and in my head.
My cloud is a part of me. If it wasn’t there, I wouldn’t know what to do with myself. A clear blue sky with no clouds to be seen is vaguely terrifying to me. It’s like the sky has no ideas, no thoughts. I stay inside most days, but on those days, I really stay inside.
Maybe I don’t have a brain at all, just a cloud. If that were true, it would mean my head is always in the clouds. I can’t comprehend the meaning of “coming back down to Earth” because you can’t return to a place you’ve never been. The world has never made sense to me, and it’s been made even stranger by my appearing in it to others as a functional human being. I pretend to exist as a functional unit in a place that doesn’t make sense, which makes making sense of myself… senseless. All these skills I’ve developed over the years to “fit in” are like a set of chips soldered onto my motherboard and intertwining with my base wiring. So now I’m an organic robot with a brain composed of cloud matter.
Clouds can change shape. They can look like dinosaurs, donuts, and other things that begin with D and other letters. I can also change shape. Not physically because that would make me Mystique from the X-men, but mentally. I can change into a “normal person,” albeit one that is “quirky” and says and does things that are “weird” to most people. But when I do this, I consume NP (Normal Points), of which I only have a limited amount. Imagine being an actor, except instead of only working certain hours in a day over a certain period, you have to work every single day, expending all your energy to give a convincing performance so that the illusion the movie is trying to create isn’t undermined. As an autistic person who has no idea how to be human, the movie is life and I am the illusion.
The Office for National Statistics recently published new data regarding autistic people and unemployment. Only 22% of autistic people in the U.K. are in any kind of work. In the past, whenever I’ve had a job interview, I could only pretend to be someone who was capable of doing the job to which they were applying. I would try to appear confident, but it’s impossible to have confidence in an ability you do not possess. Confidence is a term used for a way of being that has no contrivance, and when I’m communicating with other people, I can’t help but be contrived. I’m altering my behavior in order to communicate in the first place. In the same way, I thought I couldn’t be a good team player because of my lack of communication skills, and every single job posting I have ever seen has asked for someone who is a team player. I only have so much NP, and it’s consumed quicker the more people that are in my vicinity. It would be great if I could fool employers into thinking I’m “normal,” but it’s proven tricky. It’s hard to fake a convincing smile, or to make myself out to be an “effective communicator” or team player. Sometimes I just don’t have enough NP.
As I’ve grown older, pretending to be a neurotypical human has gotten more exhausting. Naturally, this led me to stay inside more and more. My cloudy brain thought that writing books would be much more lucrative in the long run than getting a job, so I spent years writing strange, inaccessible books that no one but me could understand. There have been sporadic attempts to find work, but my fake smile became less and less convincing, and no one wants to buy their coffee from a person who looks sad.
When I was diagnosed with Asperger’s, there was a huge break in the cloud. It was as if my persona that I’d kept welded to my face for the last 15 years melted away in an instant, and I could see everything so clearly. I could see how bad my decisions had been, and why they had been so bad: I hadn’t made them. My persona had taken control and decided things for me. All that time, I had no idea where the real me was. It was lost somewhere in that all-consuming cloud.
The diagnosis came as a relief, but it was also scary. Suffering had become part of my identity, the one thing that had been there throughout my years of masking, the one thing I could come home to. If I acknowledged the source of my suffering, discovered the reason for it, I’d have nothing to identify with. How would I feel each day if I wasn’t suffering? What would keep me anchored to reality? When such a profound and dramatic paradigm shift occurs, it can be hard to digest and to believe. I could feel vestiges of my persona influencing my thinking, clouding my mind. I’d have to construct a brand new identity while at the same time shedding this false “me” that I’d created, and that seemed extremely daunting.
It took me a long time, but I realized the only way I was going to keep going was to work with my persona, not against it. That was how I generated NP. There are times when I need my persona, and if I was trying to get rid of it, it wouldn’t help me. If I stopped resisting it, however, and used it without resentment, as I used to, it would come to my aid in times of need and restore my NP. A certain amount of masking is necessary to continue to function in society, form relationships, get jobs, etc.
It can be difficult finding the balance between feeling authentic and being a member of society. If you’ve been masking for a long time, it can be daunting to suddenly be yourself after being diagnosed with autism. You’re effectively starting over again from the beginning; your masked self has developed and taken over, while the real you is still a child. The diagnosis helped me separate my mask from the real me, and allowed me to see that if you get your mask to work with you, you can form a mutually beneficial relationship.
According to autistica.org.uk, 80% of autistic adults experience mental health issues during their lives, and according to sciencemag.org, autistic adults without a learning disability are nine times more likely to die by suicide. How can non-autistic people change statistics like these for the better?
There are several things they could do, a big one being when an autistic person makes a request, no matter how ridiculous or unreasonable it may seem, accommodate them. If they need some quiet time, leave them be and try not to disturb them. If they’re in a crowded or noisy area and they tell you they’re feeling overwhelmed, don’t tell them “it’s not that loud” or “you’ll get used to it,” take them somewhere quiet so they can calm down. If someone’s thinking about or in the process of getting a diagnosis, give them the benefit of the doubt before telling them they “don’t have autism” because they don’t support a clichéd view of how an autistic person should look and behave. (For the autistic person: your acting skills most likely contributed to their sense of disbelief, so consider taking it as a compliment).
A lot of people do these and a million other things for their loved ones, but we need them to be able to happen in wider society. Doing these things will give autistic people every chance of beating the “final boss,” also known as “day-to-day living” for a lot of people on the spectrum.
If people on the spectrum want to get and keep jobs, if we want relationships, if we want to carry on living, I believe we can’t just be who we are all the time; sometimes we’ll have to pretend. Not because we’re not good enough, but because society is not wholly accepting of us yet. The only way this will change is if autistic people talk about these issues and educate non-autistic people about autism. Maybe then we can get to a point where there will be a big break in the cloud and autistic people can let their true selves shine through for all to see.
Getty image by ddukang.